1. Thriving in Survivorship Symptom Management and Quality of Life
Lynne Padgett, Ph.D.
Visiting Program Director
Basic Biobehavioral and Psychological
Sciences Branch/Behavior Research Program
Program Director
Office of Cancer Survivorship
National Cancer Institute

2. Visibility at the National Level

3. Who are our survivors?

4. Who is a Cancer Survivor? (NCCS, 1986)
Philosophically, anyone who has been diagnosed with cancer is a survivor— from the time of diagnosis and for the balance of life
Caregivers and family members are also cancer survivors

5. Estimated Number of Cancer Survivors in the United States From 1975 to 2012
Year
Estimations and modeling provided by Angela Mariotto, PhD, based on: Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML. Projections of the cost of cancer care in the United States: J Natl Cancer Inst Jan 19;103(2): Epub 2011 Jan 12.

6. Estimated Number of Persons Alive in the U. S
Estimated Number of Persons Alive in the U.S. Who Were Diagnosed With Cancer, by Current Age (as of January 1, 2012)
(Invasive/1st Primary Cases Only, N = 13.7 M survivors)
Estimations and modeling provided by Angela Mariotto, PhD, based on: Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML. Projections of the cost of cancer care in the United States: J Natl Cancer Inst Jan 19;103(2): Epub 2011 Jan 12.

7. The Changing Demography of Cancer Survivorship
The majority of those diagnosed today can expect to be alive in 5 years (67%)
Treatments for cancer have become increasingly complex and multi-modal
Cancer patients receive most of their care in the outpatient setting, largely in the community
Cancer is a disease that affects the entire family, and often a community
Cancer for many has become a chronic illness

8. Chronic Effects of Cancer Treatment
Physical, Psychosocial, & Economic:
Depression & anxiety
Uncertainty
Altered body image
Relationship changes
Health/life insurance problems
Concerns re: Job lock/loss, financial burden
Fatigue
Pain, neuropathy
Cognition problems
Lymphedema
Sexual impairment
Incontinence
…And some positive changes: sense of purpose or meaning,
appreciation of life

9. Cancer Survivors at Increased Risk for Late Effects
Disease recurrence/ new cancers
(>756K multiple CA; 16% of new diagnoses)*
Cardiovascular disease
Endocrine dysregulation
Obesity
Diabetes
Osteoporosis
Upper/lower quadrant mobility & functional limitations
Functional decline disability
* Mariotto et al., CEBP 2007
The point of this slide is to demonstrate that the conclusion of successful cancer treatment is not necessarily parallel to the end of the disease and its effects. For many survivors, their biggest struggles begin post-treatment. Thus, we need to consider ways to help control some of these late effect health outcomes.
Life style behaviors seem to be a good place to start given that they are modifiable and have been found to reduce ones risk of many of these health outcomes in the general population and evidence is beginning to accumulate in populations of cancer survivors.
Having said that, an important precursor to investing our money and energy in the development of behavioral interventions is to first understand the health behavior practices of cancer survivors. National population-based estimates seem to be missing from the literature…

10. % with Limitations: Survivors vs. General Population
National Health Interview Survey ( ) 4,878 cancer survivors and 90,737 without hx of cancer.
Psych
Problems 1+
ADL/IADL 1+
Functional
Work
Hewitt, Rowland, Yancik. J Gerontol. 58:82, 2003

11. Many survivors will die of competing causes, NOT cancer…
Older breast cancer survivors: more likely to die of CVD than breast cancer (Patnaik, Breast Cancer Research 2011, 13(3):R64)
15-year prostate cancer-specific mortality: 5.3% vs. 30.6% non CaP-mortality (Shikanov, Prostate Cancer Prostatic Dis Mar;15(1):106-10)
Testicular CA survivors treated w/ XRT under age 35: 1.7 x more likely to die of circulatory Dz than general population (Fossa, JNCI 2007 April 4; 99(7), )

12. What are Survivors Telling Us?
They want to know how to reduce the morbidity and mortality associated with their illness.
They are also worried about the health of their family members.
They want to work with their healthcare providers to address these issues, but are frustrated that these individuals often have little to offer them in this regard.
The diagnosis of cancer may for many present a ‘teachable’ moment.

13. Moving forward to a new model of post-treatment survivorship care

14. Finding a new model

15. What do survivorship rehabilitation models and palliative care have in common?

16. Palliative care and Survivorship?

17. Common Elements Focus on maximizing Quality of Life
Maximizing functional status
Team approaches to treatment
Shared understanding of psychosocial impact
View the patient as functioning in a system

18. Attacking common problems…
Symptom management
Pain, lymphedema, GI symptoms, fatigue
Treatment planning and coordination
Goal-setting, prioritization
Nutrition, physical activity, activities of daily living
Psychosocial care
Focused on improving Quality of Life by addressing symptoms

20. Putting survivorship and palliative care together…
NCI Community Cancer Centers Program (NCCCP)

21. NCCCP – Science to Practice*
Taking evidence-based care to community cancer centers
Promoting research participation through clinical trials
Promoting research through collaborations with investigators
Unique perspective of having been on Northside’s committee then becoming the NCI rep for that committee
*impacted by policy

22. NCCCP - Survivorship and Palliative Care
Responsive goals and deliverables:
Promoting quality care across the continuum
Integrating science that is sustainable
Multidisciplinary care/Rehabilitation
Building relationships with researchers
Designing research projects that sites are uniquely equipped to answer
Early palliative care intervention
How do we make survivorhsip and PC services make money—reimbursement issues—acos
Responding to the changing environment
Working with teams to not recreate the wheel
Improving practice and clinical service with research integration
Dissemenation and implementation questions –
Project 14 – treatment summary working group – PC Lung cancer project
Utilizing contract deliverables to implement low cost-sustainable research

23. Benefits of working together
Cross-training enriches practice and patient experience
Leveraging resources across teams maximizing scarce resources
Contributes to broadening vision of palliative care for both providers, patients and caregivers

24. Palliative Care is the key.
Survivors thrive when:
Maximize functioning
Achieve goals
Manage symptoms
Palliative Care is the key.

25. 4/10/2018
National Cancer Institute